Contributors' Brief Histories

Have you followed the other links in that post? One is to the northeast of England support group site which has loads of info, much of it from medics experienced in PMR, the rest from other healthcare professionals and patients. They have a DVD for members called "You are not alone" to explain the effects of PMR and its treatment to patients, family and friends and GPs - several have expressed their approval.

Physio (as is said in the DVD I think) can often make things worse - it must be a physio conversant with PMR and aware of the limitations. Painkillers don't do a lot either - pred is the most effective painkiller because it deals with the cause of the pain, the inflammation and swelling. It doesn't, however, deal with the cause of the inflammation but one out of two isn't too bad. 

If 15-20mg pred works your GP can be assured it is most likely to be PMR and can use the Bristol paper to guide his prescribing and management. If it does - he needs to look for another answer. 

Where are you? Maybe we can suggest a better rheumy within striking distance.

There is a very active support group which meets in Chertsey and there is a meeting tomorrow:

"Just the usual reminder that the next meeting of our Surrey group will take place on Tuesday, 19th August from 11am to 1pm, at Chertsey Hall, Heriot Road, Chertsey, KT16 9DR (just down from Sainsburys)

There is a public car park opposite the venue, and tea/coffee/biscuits are available. All welcome, including those from outside Surrey, together with partners/carers." 

People come to this group from all over the place and MrsO who runs it is a member on here - I imagine though she is a bit busy today! It meets every 2 months and last time there were people from Italy (me), Wales, Oxfordshire, Hove and Newcastle. Not sure what is on tomorrow. 

This forum is a revelation to me. Thanks for your support. A

Alternatively, click on MrsO's name next to her avatar and it will bring up another page and at the top left this time you will see the word Message. Click on that and the message posting page is just the same as as posting any other post except only the person named can see it.

Bromley? I'm not familiar with where the groups are but I suspect Shirley may well be.

Wouldn't do to not know one is an emergency would it these days in the UK! Here is very old-fashioned: turn up and wait and Claudia (the GP) works until she has finished or 11am whichever is latest. And then she does house visits! Just fancy ;-)

I stumbled severely at the 3mg level but on reflection things had started going pear-shaped at the 5mg dose but, knowing no better at the time, I continued reducing by 1mg a month as advised by my rheumatologist.  When literally becoming unable to walk again my rheumy increased me back to 10mg  where everythng stabilised and I wasable to fairly quickly reduce back down via  alternating doses of 10 and 7.5 until I reached 5mg where I remained for 5-6 months.  I then recommenced reductions but just tapering by half a mg as described above, successfully reaching zero Pred.

Increasing your dose by just half a mg to cope with your returning pain will not help you - you obviously still have lurking inflammation and if you don't get on top of it with a higher dose it will continue to build.  If you were comfortable at 5mg thenthen returning to that dose may prove successful.  And, yes, a touring holiday, sleeping in different beds, can place stress on our bodies when our steroid weakened muscles are not strong enough to cope.  I do hope you will soon feel better.

Remember though that overdoing exercise in any form whilst you have inflammation in your system is always likely to set you back and will entail a slower journey to recovery.  Steroids are not curing your PMR (nothing does at present) - they are just damping down the inflammation that causes the symptoms until PMR goes into remission of its own volition and that will be when it wants to and not when we or our medics want it to.

However, we do often hear of men who suffer with this condition experiencing easier rides through the PMR maze and can get often get away with a little more exercise than us ladies - possibly due to different hormones coming into play or a larger muscle mass perhaps.

I do hope you soon feel better on the increased dose and will be in a good place for your planned Walk next May. 

Whether it is the beds when on holliday I won't comment on - I can only say that when my PMR was bad going on holiday was exhausting - and I take my bed with me! It is everything - you are in different places, even sitting in the passenger seat is tiring! If in hotels or with family/friends you are taking your case out of the car, fiddling about finding things, repacking and you don't have everything to hand. And you sit up far longer talking - even that is tiring when you have an autoimmune disorder.

Never try to reduce when something liek that is the order of the week -you need to rest if you are trying to reduce your pred dose to give your body the best chances of coping with it.

There is a very slow reduction scheme floating around on here if you are interested - it spreads a reduciton over about 3 or 4 weeks. It has worked well for a lot of people, allowing them to get to a lower dose than ever before and without the usual discomfort. I do 1mg at a time as I can't cut my tablets, others do 1/2mg at a time. 

But don't forget - you are not necessarily reducing to zero relentlessly: the idea is to find the lowest dose that controls your symptoms. As long as the underlying autoimmune disorder that causes the symptoms is active you will need some pred. 15mg works for almost everyone to control the inflammation to a baseline level - then you are looking for the dose that keep it there. Initially it might be 9mg, or 5mg - or if you are lucky even lower. But forcing a reduction will just allow the symptoms to return and you'll have to start again.